Length of time on prednisone.

Although I've done well with it I know doctors dont want you on it forever. Started at 40mg after my diagnosis weaned 5mg a week til 15, was on 15 about 2 weeks when I started Imuran but apparently Imuran and me dont mix... I got Sepsis and kidney failure and then after I recovered from that I got pancreatitis...

So I'm on Pred at 30mg indefinetly til we look at Remicade. Which kinda scares me now since I had one med try to off me already.

Has anyone here been on Pred for a very long time, and if so how has it affected you. I'm going on 8 weeks or so now and the minor side effects are there but they don't bother me and I feel pretty dang good to be honest, I wish I could stay on Pred forever.... I think my GI ruled out Pentasa based on where my crohns is... so I dunno what other alternatives I have.

 

Hello Ishiman0627- I was on predisone for close to 4 years while I was a child. Main issue for me was mood swings and weight gain. Weird thing is most of the weight was chest up especially my face. I was on the higher dosage like you and the previous person who posted as I was allergic to the normal medications used and at that time there was none of the new biologics (Humira/Remicade/Cimzia) and I had been let go by a doctor that misdiagnosed me and thought I just had a winter flew. So by the time I got to a gastro specialist I was way outta control. The use of the predisone and imuran together helped to get me under control and was on the predisone for close to 4 years as I mentioned and on imuran for 13 years until my body stopped using the imuran correctly and it was no longer useful then to keep me under control. Which by then Humira was out so I was put on that and methotrexate but those were completely worthless. I was then put on Remicade and it was an amazing medication and I was under control. Sadly after after 4 years my remicade showed what it was really doing to me and I was immediately pulled off of it and now am on Cimzia.

I am very sorry to hear about your ordeal with the imuran I've never heard of anyone getting sepsis from imuran. What an ordeal to go through. But you are at least fortunate enough to have a vast array of options available to you not only the 5‐aminosalicylic acid (as there are still 4 more beside the pentasta) you as well can try any of the biologics which are Humari, Remicade, and Cimzia to name a few. I wish you the best of luck!!

i have been on and off prednisone for YEARS...literally decades...i hate the crap but it seems like i hit a wall when i gte down to 10 mg and i can't go lower or i flare really bad. i hate the stuff- moon face, very emotional, turn into an ahole or so my wife says...skin is bad, don't heal at all- a cut will take weeks to heal...wow i'm pathetic...oh well. until we find something that works...

mtgman..I have the same problem with healing even a scrap..I had an ingrown toe nail surgery recently, and it was till was draining 3 1/2 weeks later and that was with antibiotics..Off and on for decades..Do you have any long term effects since I am at the three year mark? How long is actually to long without deciding on another drug?

Cindy

Ishiman0627-Yep something just didn't jive right in your system with the imuran as a side effect is kidney issues. Your sepsis was most likely the mixture of imuran and the prednisone making your immune system weakened. But thankfully like I mentioned there's a lot more options out now that are way better. I would recommend the remicade its an awesome medication. Let us know what path you and your doctor decide.

A lot of people mention the issue of the osteoporosis and while yes prednisone is not good for your bone density, the osteoporosis overall is caused by your Crohns or Colitis not the prednisone itself.

mtgman- Wow man where are you from cause I severely feel bad for you. Why the hell would a doctor put you on Humira and leave you on prednisone (your not supposed to be on imuran or prednisone with any of the biologics. Its usually typical for a mixture of Humira and Methotrexate which if your not under control adjustments can be made and if still not getting you under control you go on to the next biologic or one of the other 5‐aminosalicylic acids. I see you mentioned issues with the remicade, where you still on prednisone or the asacol when you were getting the remicade because if so there's your reason. I could not imagine how bad your skin and healing issues must be especially being on prednisone, humira, and asacol all at the same time its basically defeating the purpose of each med and just a build up of bad stuff in ya. I severely hope your doctor gets his act straight, leaving you in the state you are in is simply inexcusable.

Your issue somewhat reminds me of a close friend who lives in TN her daughter (around 8 years old I believe) was having symptoms classic of colitis and was wasting away from being in a flare up the girl was admitted to her local hospital and even with a colonoscopy and a team of GI doctors there the group of bobble head idiots did nothing even with the results from the colonoscopy showing colitis (which I wasn't even there and hundreds of miles away and could still tell from the symptoms and pictures) these pathetic excuses of GI doctors came to the conclusion they were unsure and weren't positive if it was colitis or IBS as they thought the inflammation showing might be just an allergic reaction and on top of that were not sure how to treat her or what to do so they basically did nothing allowing this gilr to continue to suffer. There's a big difference between colitis, IBS and what would be counted as an allergin issue. Thankfully the child's regular primary care doctor put her on pentasa and guess what the girl started getting better.

Later after seeing an autoimmune specialist it was found this girl has eosinophilic colitis but not only does that present the same symptoms but is also treated much in the same way as colitis and crohns. There's literally no excuse for for that Gastro teams treatment of this girl and its clear not only did they have poor education but that also they should not be practicing/treating people period. I mean that's literally frighting that my one gasto doctor which is part of a group but himself alone is smarter then a entire team at this hospital in TN.

Lordwood, you can be on pred, Humira and azathioprine all at same time and GI are now actively recommending having remicade/Humira whilst on azathioprine/6mp as results have found that having a biologic and immunosuppressant work better together.

When I started Humira in January I had just restarted azathioprine a month before and had been on pred for 6 weeks. I will stay on azathioprine now for the future and wished we had never tried to stop it. The Humira didn't work well for me and the pred continued until Humira kicked in which was about 2 months and then tapered pred off.

I was originally on pred when I was first dx and we tried tapering but each time I got to 20mg it flared back up. At that time none of the other treatments worked and biologics weren't developed and immunosuppressants not used for CD. My saviour was to have an ileo which I have never regretted and gave me my life back. Pain and urgency completely went the night of the operation and it was a great feeling.

Just becuz you reacted to Imuran does not mean you will react the same way with Remicade or any other Crohns meds. Give the Remicade a try, you might find you feel better. Pred is not meant to be taken fulltime as it can cause alot of secondary problems for you, bone loss and osteoporis one of them. Hope things clear up for you soon. Hugs!

stripey- I've not heard of any doctor push the use of imuran or prednisone while on any of the biologics, yes to the common side kick of methotrexate which is almost always put with biologics. I was on a prednisone/imuran/endocort cocktail towards the end when all three drugs were no longer able to help me and had to wait till the prednisone and imuran were out of my system before I start Humira, which it is noted in the list of drugs not to mix especially the use of imuran big time as this can cause serious problems and puts you at greater risk for infections beyond what your biologic does. The other matter is the use of these two while on the biologic hinders and prevents the full benefit of whichever biologic your on at the time.

mtgman- I was getting at the fact you being on each at the same time is going to hinder and prevent any hope of help from the Humira itself, I had also asked if while you were trying the remicade you were on these as well, because if you were it would account for the trouble you had with it. Going off the others and starting at a high dosage of Remicade alone or with methotrexate would be an ideal way to see if remicade can help, if it doesn't then I fully agree with you sadly you probably will be going for surgery :( I started with my delightful gastro issues just like you deal with too, except I started at the age of a year and a half. I was one of those extremely unfortunate people to start at the beginning unlike most who are in their teenage years or younger 20's. I'm just thankful I live on the east coast.

I could be mistaken to both of you, but I read up quite well and threw a book of questions at my docs before trying any of the biologics as they are/can be extremely dangerous. There is also quite commonly the fact that a lot of doctors like to practice in their own way sometimes. Either way I'm just simply saying it is not my intent to change your mind or tell you what to do as I would not want anyone telling me. Wishing you both the best :)

There have been recent studies done that showed an improved remission and control of symptoms if biologics are taken along with an immunosuppressant like azathioprine/6mp. the pred thing is usually because people are on it to control symptoms and usually at high doses and this can take time to taper properly.